Visiting the Neuromuscular Disorders Center: What to Expect

When you choose Children’s Hospital Los Angeles, your child and family benefit from renowned pediatric subspecialists who deliver the highest level of care. Knowing what to expect can help you get the most out of each appointment. We look forward to meeting you and your child.

Neuromuscular Intake Appointment

If your family is new to our program and does not have a diagnosis, the first visit will likely be an intake session with one of the neurologists that specializes in neuromuscular medicine or clinical neurophysiology. During this appointment, we take time to get to know you and your child. Because many neuromuscular disorders are genetic, we will ask in detail about the family history.

If your family is new to our program but has a confirmed neuromuscular diagnosis, your child may start in the multidisciplinary neuromuscular clinic directly. This is the case if children have been diagnosed by another neurologist who has referred them for multidisciplinary care.

Genetic testing

Based on results of the history and physical, we may recommend genetic testing. This involves taking a blood or saliva sample from your child. Genetic testing enables us to detect gene abnormalities associated with neuromuscular disease.

Children’s Hospital is one of the few pediatric programs in the country with an in-house genetic testing program. Working closely with medical geneticists enables timely and precise results. Find out more about our Center for Personalized Medicine.

We also partner with multiple community patient advocacy groups. These groups have allowed for streamlined genetic testing without cost to the patient’s family or insurance.

Electromyogram (EMG) and nerve conduction studies

Our team includes specially trained pediatric neurologists who provide on-site EMG and nerve conduction studies. These tests assess the electrical activity and overall health of your child’s nerves and muscles. Find out more about neuromuscular disorder testing and monitoring.

Your Child’s First Multidisciplinary Neuromuscular Disorder Center Appointment

Children with a neuromuscular diagnosis come to our multidisciplinary center at least once a year for ongoing treatment. At this center, your child sees multiple pediatric specialists, including a neuromuscular physician, cardiologist and orthopaedist, in one visit. The first appointment starts in the morning and typically lasts until early- to mid-afternoon.

Here’s what to expect during your child’s first multidisciplinary Neuromuscular Disorders Center appointment:

• Check-in: Our nurse care navigator checks your child in to the clinic between 6:45 and 7:30 a.m. This nurse leads you and your child to a patient care room. We post the appointment schedule in the room so you know which specialist you will see and when. Each specialist will see your child for an entire appointment. This is to ensure that there are no surprises or unnecessary waiting in your appointments.
• Specialist consult: Throughout the morning, our specialists meet with you and your child. We determine in advance which specialists can best help your child and arrange the schedule accordingly. In addition to performing consults, specialists may recommend additional testing to rule out other conditions.
• Social work support: Our social workers are available for support needed for school Individualized Education Plans (IEPs), 504 plans, connecting with community resources such as Supplimental Security Income (SSI), CalFresh and Access Transport, transition to adult care, and helping with advanced directives such as 5 Wishes (booklets are free to our neuromuscular population and available in multiple languages).
• Care recommendations: After all relevant specialists have performed assessments, we meet to determine the right treatments for your child. A member of the team discusses care recommendations with your family and answers any questions you may have. Our nurse navigator coordinates additional appointments or services your child may need.   
• Follow-up visits: Once your child starts treatment, we see them back in the multidisciplinary clinic every 12 months for monitoring as a team. During these appointments, we assess your child’s response to treatment. Single-specialty neurology clinic visits will follow every 2-6 months.
• Access to research: for most of our conditions, our specialists discuss clinical trials either available at our center or other centers.
• Resource recommendations: We help connect families with durable medical equipment (DME) vendors and patient advocacy groups.
• Medical Alert Cards: We can provide medical alert cards for patients. These are USB cards to hold important medical information.
• Ongoing assistance and support: You are welcome to contact us between appointments with questions. We typically respond within one business day. Feel free to call our office and e-mail us directly.

Additional testing

If specialists order additional tests during your child’s first multidisciplinary clinic visit, they are typically available the same day. These tests may include blood draws and X-rays. DEXA scans are done at a separate visit.

For most patients, once a year, we see your child for heart and lung tests to assess the impact of neuromuscular disease on these organs. These tests are available in our Center and include EKG, echocardiogram, cardiac MRI and pulmonary function tests. Testing is based on available published standards of care.